ALS Inaction

My kitchen is a mess and I am frustrated. There are things that my son could easily do but "forgets" or doesn't think about doing., thinks like wiping down the counters to remove the sticky spills adhering to the countertops, things like putting away the empty wine bottles accumulating beside the sink or getting rid of his empty beer boxes when they are empty and not a week later. Mostly he leaves as much as he can for Rosa to do on Friday. "After all", he says, "we pay her to do this stuff."

I can't stand the mess or the smell of a dirty kitchen. He can, but I can't. I don't want to be continually asking him to do this stuff; it takes even more out of me some days than just putting up with the mess. He already stays in his room most of the time, playing online games. If I have to ask him to do something every time he comes out, eventually he will come out even less. As usual in life, if I want a clean kitchen I had better figure out how to clean it for myself. Or wait, as Ricky says, until Friday when Rosa comes, putting up with the smell and mess.

There are things I can do, and I do them as best I can. I can wipe down the counters; I did it this morning. It just takes a lot longer and a lot more energy. I can put away the wine bottles; after all, I did drink the wine. It just takes a lot longer and a lot more energy. I have a real issue with the dishwasher but I could probably figure out a way to empty, fill and start it. It just takes a lot longer and a lot more energy. I can put away the folded sheets that have been sitting on the couch since Monday. I can do most of this stuff.

The challenge is that a simple task for someone like a 22 year old boy, or most other people for that matter, is a massive task for me. Take the example of wiping the counter. I did it this morning because I could no longer stand the stickiness. First of all, all the dishcloths were dirty, so I dumped them into the sink in preparation for doing a load of dishcloths and tea towels in the laundry. I will do that later this morning.

Then I got a clean cloth from the end of the hallway. This exercise meant backing my wheelchair out of the kitchen. Fortunately this morning I had not transferred to my walker or else it would have meant using the walker to go the hallway distance and back, something I can no longer safely do, or transferring back to my wheelchair, a non-trivial task I assure you. So I backed out of the kitchen and wheeled down the carpeted hallway. Since I cannot turn around in the hallway while on the wheelchair, I then backed down the hallway, into the dining area, whereupon I turned again and went into the kitchen.

Before I would wipe the counters I had to remove as much as possible from them. This included some foodstuffs that needed to go into the cupboard, something I can only do if I stand from my wheelchair, something I can still do but something that takes a fair bit of effort and energy. So stand I did, and away went the can of beans and jar of steak spice.

The next step was clearing away the dirty dishes, some of them still remnant from my party on Sunday. Somehow, despite three days of dishwasher availability, there are still glasses needed cleaning. There are also pots and bowels that need a washing too. For now I just put them into the sink and I will ask Ricky to do another load of dishes later today.

After that comes the wine bottles. They need to be rinsed, have their labels and collars removed and then they need to be placed in a wine box and put in the hallway pantry. All of this was just too much for me this morning, so I just pushed them aside as best I could.

Finally, I could wipe the counters.

All of these steps are simple when you can walk and stand and lift and move. The tasks of daily living are trivial when you are not trapped in a wheelchair, losing your ability to stand, losing the strength in your arms, feeling the general exhaustion that I feel from when I awake to when I drift into sleep. For a healthy person, it's a task which takes a few minutes. For me, it takes about a half an hour. That's ALS in action, or rather ALS inaction.